Editorial volTa n. 6

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May 8, 2014 |
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Privacy is dead

If the cost of sports cars had fallen at the same rate as genome sequencing, we could all be driving around in Ferraris that cost 40 cents, reported a scientist from Stanford Medical School recently. But in the rush for the 1,000-dollar (or euro) genome, are we forgetting the many other costs and concerns that come with ‘more data for less money’? Is technology moving faster than our ability to make sense of it?

Using genome based information and technologies for the benefit of public health is dependent on vast biobanks of data. And those data need to be linkable. From what we know already, it will not be our DNA or genes alone that will determine aspects of our health; we need to incorporate factors related to our environment and lifestyles. We need big data.

The privacy (or not) of those data is the focus of this issue’s Special Report. How, when, and with whom, should genomic data be shared? Once whole genome information is included, it is generally believed that medical data cannot be effectively anonymised. Privacy is dead. Yet the use of biobanks and the genetic links they could reveal (even if so far, they have proved elusive) is the structure behind the future public health vision of predictive, preventative and personalised healthcare.

The chaos surrounding the UK Government’s attempt to roll out the care.data project linking local doctor and hospital records (against a vigorous ‘opt-out’ campaign) shows just what happens when policy makers underestimate the need for public engagement. As the PACTIA Future Panel on public health genomics noted: “The extent to which genomics data are collected, stored, shared, and for what purposes, is first of all a political and societal issue and should not be regulated via individual consent alone.”

The Editorial Team

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volTA magazine

volTA was a magazine on Science, Technology and Society in Europe, initiative of fifteen technology assessment organisations that worked together in the European PACITA project aimed at increasing the capacity and enhancing the institutional foundation for knowledge-based policy-making on issues involving science, technology and innovation. It was published between 2011 and 2015 in 8 numbers.